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The Lost Enzyme Project – Full Radio Interview
WTMX Chicago
The Lost Enzyme Project is dedicated to funding the development of a new life-saving treatment and supporting those affected with Beta-mannosidosis. They aim to deliver treatment that crosses the blood-brain barrier, targeting the brain and body effectively. With us this morning to talk more about the Lost Enzyme Project and the work they are doing for people living with beta-mannosidosis is Laurel Gregier, the Co-Founder of the organization.
La batalla de Marco: el niño hispano que enfrenta una de las enfermedades más raras del mundo
Unvision News
Marco Fernández, un niño hispano que vive en Chandler, fue diagnosticado con beta-mannosidosis, una enfermedad genética ultra rara que solo ha sido identificada en menos de 50 personas en todo el mundo. En Estados Unidos, apenas hay cinco casos documentados. Su familia, junto a otras en el país, ha lanzado una campaña urgente para recaudar fondos y acelerar el desarrollo de un tratamiento que podría cambiar sus vidas.
Great Falls community rallies for 'Waffles for Wishes' fundraiser
MTN News
The Great Falls community came together for “Waffles for Wishes,” a fundraising event where residents purchased sweet treats with proceeds benefiting the Lost Enzyme Project and Make-A-Wish Foundation to help fight critical diseases
The Lost Enzyme Project and Montana News
MTN News
15-year-old Oliver Mills from Great Falls, MT, is one of only a few children in the U.S. diagnosed with beta-mannosidosis, an ultra-rare progressive genetic disorder that affects his mobility, vision, and cognitive abilities. Despite the challenges, Oliver remains optimistic and full of personality, inspiring those around him. His family helped co-found The Lost Enzyme Project to support research toward a potential enzyme replacement therapy that could offer hope to others facing the same condition.
Great Falls Teen Living with Ultra Rare Disease Inspires Fight for a Future
NonStop Local Great Falls
15-year-old Oliver Mills loves the Lakers, basketball, and cheering at local games—but behind his smile, he’s battling an ultra-rare genetic disease: beta-mannosidosis. Fewer than 40 people worldwide have it, and Oliver was the first diagnosed in the U.S. This disease is stealing his ability to walk, see, and stay independent. But Oliver isn’t giving up—and neither is his community. His family is just $20,000 away from funding a breakthrough treatment that could change his life. In this video, you’ll meet Oliver, hear his powerful story, and see why time is running out to make a difference.
Race is on to find treatment for an ultra-rare disorder affecting two Valley children
12News
CHANDLER, Ariz. — Two children who live just miles apart in Chandler, are battling an ultra-rare genetic disorder.
There are only five known cases of the disorder, Beta-mannosidosis, in the United States, according to experts. Researchers are racing to find a treatment and cure.
Great Falls teen is battling an extremely rare disease
3KRTV
When Oliver Mills was diagnosed as the first U.S. patient with Beta-mannosidosis, his family’s life changed forever. After enduring a historic bone marrow transplant, Oliver’s mother, Laurel, launched The Lost Enzyme Project—a groundbreaking initiative uniting science, advocacy, and biotech to develop a cure for this ultra-rare disease.
Great Falls teen living with Beta-mannosidosis
NonStop Local
'Angels' Help Teen Through Ultra-Rare Disease
Benefis Health System
When Oliver Mills was diagnosed as the first U.S. patient with Beta-mannosidosis, his family’s life changed forever. After enduring a historic bone marrow transplant, Oliver’s mother, Laurel, launched The Lost Enzyme Project—a groundbreaking initiative uniting science, advocacy, and biotech to develop a cure for this ultra-rare disease.
Rare Disease Day: Great Falls Teen One of the 'Ultimate Medical Underdogs'
Benefis Health System
When Oliver Mills was diagnosed as the first U.S. patient with Beta-mannosidosis, his family’s life changed forever. After enduring a historic bone marrow transplant, Oliver’s mother, Laurel, launched The Lost Enzyme Project—a groundbreaking initiative uniting science, advocacy, and biotech to develop a cure for this ultra-rare disease.
Chandler family fundraising for son's ultra-rare disease treatment
Fox 10 Phoenix
A Chandler, Arizona family is raising $500,000 for life-saving treatment for their son Marco, who is one of only five known U.S. cases of beta-mannosidosis — a progressive, ultra-rare genetic disorder. Diagnosed earlier this year, Marco’s condition can lead to blindness and loss of mobility without intervention. His parents, Fernando and Melissa Fernandez, are fundraising through the Lost Enzyme Project, a nonprofit dedicated to supporting families affected by rare diseases.
Lucha contra extraña enfermedad; necesita 521 mil dólares
El Imparcial
Fernando Fernández es padre de Marco, un menor de 7 años con un extraño padecimiento del cual se tiene registro de menos de 50 casos a nivel mundial.
Buscan reunir 521 mil dólares para tratar rara enfermedad
Expreso
En Estados Unidos, cinco niños han sido diagnosticados por beta-mannosidosis, una enfermedad tan rara que solo se conocen 45 casos en el mundo; Marco, un pequeño de 7 años, es uno de ellos.
